Welcome to Cleveland

So after my doctor wrote my letter of introduction to Cleveland, they scheduled my appointment for June 17th.

A few days later, my itinerary arrived and ... wow. I was expecting a full day, but wow, not that full! My day started at 7:05 and my last appointment started at 2:30.

My mom, Cameron (my boyfriend) and I all drove up the night before and stayed in a hotel... um, it was tiny, but I guess it worked. I was on IVs at the time and it just... I dunno. IVs in a hotel just doesn't sit well with me. Too icky!

We woke at 5:30am, got ready and left the hotel at 6:30am. I had managed to forget my power cables for my airway clearance at home (last time I try to pack everything in about 20 minutes... sheesh) so I had Cameron do CPTs on me. Nothing like asking your boyfriend to beat you, lol! We arrived at the hospital at 7, just in time to stand in a huge line for the lab. That was my first appointment, bloodwork!

After they took what felt like all of my blood (about 16 tubes), I went upstairs for my Pulmonary Function Test (PFT). This wasn't the normal kind that I do in the clinic at home, this was the full PFT which they do once a year. It included 3 kinds of tests done on a machine that I blew into, followed by an albuterol treatment, and then repeating the tests. Most CF patients are familiar with this routine. Then we did a 6 minute walk. They put me on oxygen before we even started the test. They said they did that for everyone so they wouldn't have to stop during the test to put the oxygen on if I needed it. I guess I understand, but I still didn't care for having that nasal cannula on.

I was told before I went that no matter how much I disliked something, do not argue with how Cleveland did something unless I felt that it would be detrimental to my health. To understand that they do things differently and that I could ask questions, but that I needed to be as compliant as possible. I feel being compliant is something they hold over your head as a CFer. "You better do as I say or I won't recommend you for transplant if you need one!" kind of threat. I've always been very compliant... very inquisitive, but compliant. And stubborn, but that's just a family trait :)

Anyway, continuing with the day... Next stop was for a chest CT, really easy. The ones that I've done in Cincinnati were kind of difficult. A lot of "take a deep breath in and hold your breath" followed by "exhale completely and hold your breath out." I don't remember a lot of that with their CT process, which was just fine for me! Then I had your standard chest x-ray. Nothing too exciting there.

After those tests were finished, we got lunch at a cafe there, which was really good! Then back up to the offices to meet with an insurance specialist. There wasn't much for her to tell me since I'm under my parent's insurance still and they had agreed to give me full coverage for the transplant. I even get a travel and living expense allowance! Then I met with the social worker. She administered the psychological evaluation to make sure I was stable enough to go through the process and that I had a good support system in place for after the surgery. Both of which were not a problem. Especially with the support system -- being a close-knit catholic family does have it's perks sometimes!

Finally, I got to meet some of the transplant team! First, the pre-transplant coordinator/nurse came in and gave me a brief introduction of how the Cleveland Clinic works, their statistics, what to expect from transplant, etc. Next, I met with Dr. Olbrych. He was absolutely wonderful and finalized my confidence in the center. He didn't sugar coat anything, but with something as serious as a lung transplant, I don't think things should be anything but straight forward. He asked me if I was told I had to have the surgery tomorrow, would I do it? I told him no. Because of that answer, my case was not sent to the board to be placed on the list. Instead, I was to return in 3 months to be re-evaluated.

In the meantime, I should continue to go through with the other tests required to tests my other organ systems, which is what I've been up to....